Public consultation

on gluten-free prescribing

NHS West Kent Clinical Commissioning Group is proposing to stop routine prescriptions for gluten-free products for people with coeliac disease. We would like to hear your views on the issue – whether you have coeliac disease or not.

For the past 30 years, the NHS has been prescribing gluten-free products to patients who have been diagnosed with coeliac disease. NHS West Kent CCG spends over £130,000 a year on these prescriptions. This started when gluten-free foods were not as readily available as they are today and food and diets weren’t so widely understood and documented. With a limited budget and an increasing demand for services, NHS West Kent CCG is evaluating every service it pays for and making decisions about the best value for all our patients. We are proposing to stop providing glutenfree products on prescription for people diagnosed with gluten-sensitive conditions such as coeliac disease and dermatitis herpetiformis (a skin condition linked to coeliac disease). We would like to hear your views on this proposal.

Have your say

The consultation is open... If you need more information about this consultation or would like the consultation document in another format please email [email protected] or call 03000 424348.

Who are we? NHS West Kent Clinical Commissioning Group (CCG) is a body of GPs and other healthcare professionals, responsible for commissioning healthcare services across the west Kent region with a budget of £472m. We represent over 250 GPs and serve 463,000 residents. As part of the NHS, the CCG is funded through taxation and has a fixed budget to provide health services for the whole population. We have to make decisions about which health services we can commission and what we can provide on prescription. With increased pressures on our limited budget, part of our role is to assess what mix of services provides the best value for our patients.

Your views are important to us. Please read this consultation document and fill out our survey. The deadline for your responses is 29 January 2017. Only after all responses have been received will NHS West Kent CCG make the final decision. There are several ways that you can feed back your views. • Complete the survey online: www.surveymonkey.co.uk/r/WKglutenfree • Complete the survey available in community and children’s centres, hospital waiting rooms, GP practices and gateways using the free postal address below: Freepost Plus RTEG-RHKB-EJGJ NHS Kent and Medway Commissioning Support Unit,Kent House, 81 Station Road, Ashford TN23 1PP • Visit one of the roadshows taking place between 29 November and 29 January – see our website for details www.westkentccg.nhs.uk/get-involved • Ask questions at the CCG governing body meeting on 29 November 2016 from 1.30 – 2 pm at Maidstone Village Hotel, Castle View, Forstal Road Maidstone, ME14 3AQ. • Attend an open discussion on 25 January 2017 at 6.30 p.m. to 8.30 p.m. at the Angel Centre, Angel Lane, Tonbridge, Kent, TN9 1SF.

What is the proposal? For the past 30 years, people who have been diagnosed with coeliac disease (a sensitivity to the gluten found in wheat, barley and rye) have been prescribed a range of glutenfree products by the NHS. Providing these prescription items through community pharmacies made sense before gluten-free foods became widely available in supermarkets and online. With the increased availability of gluten-free products, NHS West Kent CCG is proposing to stop the routine prescription of gluten-free products. We want to know whether the people of west Kent agree with this proposal, if there are any groups who would be particularly impacted by the change and, if so, how could we reduce the impact?

What are gluten-free products? Gluten is a type of protein that is found in the cereals: wheat, barley and rye. These cereals are present in many of the staple foods in the UK diet (for example, bread, flour, pasta); gluten-free versions of these products contain different milled grains. Some carbohydrate staples are naturally gluten-free, such as rice and potatoes.

Why do people need to follow a gluten-free diet? Gluten-free foods are recommended for people who have been formally diagnosed by the NHS with gluten-sensitive coeliac disease or dermatitis herpetiformis (a skin condition linked to coeliac disease). Coeliac disease is an autoimmune disorder that affects approximately 1 in every 100 people in the UK. The immune system reacts to gluten, damaging the surface of the small bowel (intestines), disrupting the body’s ability to absorb nutrients from food. It is a long term condition without a cure. People diagnosed with coeliac disease must follow a strict gluten-free diet.

Why do people with coeliac disease have gluten-free products prescribed by the NHS? There is no cure for coeliac disease and the only treatment for the condition is a strict gluten-free diet for life. Thirty years ago, when the NHS started prescribing gluten-free products, it was hard to find them in shops. Instead, GPs gave prescriptions for gluten-free products and they were supplied through community pharmacies. Even with much greater availability of gluten-free products in shops and online, NHS West Kent CCG has continued giving prescriptions for a limited number of standard gluten-free items per month for patients who have received an NHS diagnosis of gluten-sensitive coeliac disease or dermatitis herpetiformis.

What is the cost of gluten-free prescriptions? In England, the current annual spend on glutenfree products is £24.7 million (based on an analysis of prescription data, April to June 2014). Given the current challenges facing the NHS, CCGs need to ensure a fair use of resources for all their patients. There are several conditions which require specialist diets as part of the treatment (for example, lactose intolerance or nut allergies). However, coeliac disease is the only one to receive specialist diet foods on prescription. The cost to the NHS of prescribing some glutenfree products can be higher than buying similar items from the supermarket. This is because the cost of the item includes the additional handling costs charged by pharmacists and wholesalers, as well as the cost through the GP’s time. In England, prescriptions for gluten-free products are not free of charge unless the patient qualifies for free prescriptions. Even if the patient pays for the prescriptions, the charge may not cover the full price of the food or the GP’s time. NHS West Kent CCG currently spends over £130,000 each year on prescriptions for glutenfree products for people living with coeliac disease.

Between June 2015 and May 2016 there were 9,800 items of gluten-free products prescribed from the 61 GP practices in our area.

Why stop routine prescriptions of gluten-free products? There is an increased awareness of coeliac disease and gluten sensitivity, which has led to better food labelling and information. A general trend towards eating less gluten means there is more demand for gluten-free foods. A wide and expanding range of gluten-free foods is available from supermarkets and online. This means the requirement to prescribe items for a person maintaining a glutenfree diet has been reduced and now does not represent value for money. NHS West Kent CCG faces substantial budgetary challenges. In reviewing our prescribing budget to ensure we are spending it in the most effective and fair way, we feel the money spent on glutenfree prescriptions can be spent on other services without having a significant impact on the health of those affected.

Summary of the issues Diet • People with coeliac disease must maintain a strict gluten-free diet. • There are a number of naturally gluten-free carbohydrates which are widely available and can be used instead of foods like bread and pasta. These include rice, potatoes and flour alternatives such as millet and corn flour. • Gluten-free alternatives to bread, flour and pasta are currently available on prescription.

Availability • Lifestyle and cultural changes in the UK mean many people without a medical complaint now follow a gluten-free diet and a greater range of naturally gluten-free staple foods (for example sweet potatoes and yams, rice noodles, corn meal and gram(chickpea) flour) are used in cooking. • Awareness of a broad range of restricted diets and lifestyle choices has led to many more of the most popular and common food products and staple ingredients being widely available in gluten-free versions, including pre-packaged snacks and ready meals. • As these changes have happened, gluten-free foods have become relatively less expensive than they used to be and there is an increased variety of gluten-free products in supermarkets and shops. • Many take-away outlets, cafes and restaurants have gluten-free menu options. • The rise of online shopping means people in more rural areas can arrange delivery of specialist gluten-free items to their homes.

Information and labelling • Changes to the law mean food labelling has improved and it’s easier to see which foods contain gluten. • National initiatives, including industry and voluntary sector partnerships, are developing quality guarantees for gluten-free products. • Health professionals provide dietary information to people with coeliac disease. There is a lot of additional information about how to eat a healthy gluten-free diet available free online and from support organisations such as the Coeliac Society.

Cost • When gluten free foods first became available, the costs were significantly more expensive than the gluten containing equivalent. The price difference has since narrowed considerably. • Gluten-free products, such as bread and flour, do cost slightly more than their standard equivalents. For example, at the time of writing (October 2016), a 400g gluten-free loaf of multigrain bread costs £1.50 in Tesco and Asda against a price of £1.00 for a gluten containing equivalent. This can make gluten-free diets slightly more expensive for people with coeliac disease. • In England, gluten-free foods on prescription are not free of charge unless the patient qualifies for free prescriptions. • The cost to the NHS of a providing a gluten-free product is more expensive than buying it from a supermarket because of the wholesale and pharmacist handling costs.

Fairness • National guidelines advise the prescription of gluten-free items for people with coeliac disease, however many CCGs are consulting to stop prescribing gluten-free products on the NHS.

• NHS West Kent CCG could save around £130,000 if it did not give routine prescriptions for glutenfree foods for people with coeliac disease.

• The NHS does not provide food on prescription for other groups of patients whose conditions are associated with, or affected by, the type of food they eat.

• This money spent on gluten-free prescribing could be spent on other services which would benefit more patients.

• We need to balance health and wellbeing of the affected patients with the need to share our resources equitably across our whole population.

Additional information www.coeliac.org.uk www.bda.uk.com/improvinghealth/ healthprofessionals/policy_statement_ gluten_free_food_on_prescription

We have included some questions to help us understand and address any specific impact on those currently in receipt of prescriptions for gluten-free products.

Your views

Please return the completed survey to: Freepost Plus RTEG-RHKB-EJGJ NHS Kent and Medway Commissioning Support Unit,Kent House, 81 Station Road, Ashford TN23 1PP

We would like to hear your views on our proposal to stop prescribing gluten-free foods by completing the survey.

Alternatively you can complete this survey online at www.surveymonkey.co.uk/r/WKglutenfree